Our Journey

We decided to create a blog so we could share with family and friends about "our journey". Our son Noah is 4 years old and he is the constant light in our world. He was born with a rare genetic disorder called Rubinstein Taybi Syndrome.. Life has not always been easy but Noah has taught us how to be courageous. We are so proud of his accomplishments the past four years. He is beautiful, funny, courageous and strong. We feel so blessed God has chosen us to raise Noah.. We also hope that new parents receiving an RTS diagnosis will find comfort in our words. Nicholas is the perfect addition to our family. God has once again blessed us with a amazing, beautiful little boy. We are so comforted knowing that Noah now has a little brother. Life is beautiful having these two angels in our world.

Saturday, September 5, 2009

There Are Still Tears.

Today for the first time in a very long time I wept about Noah's diagnosis. I know it has been 3 years and maybe some people think I should be over it. Well, I realized today that once in a while there will still be times I will cry and that's OK. I wept for all the times that Noah has been in pain and is unable to speak to tell me. I wept for the feelings of guilt that I feel when the feeling of not doing enough creeps its ugly head. I wept for the fact that my son is turning 3 and he is not yet walking independently. I wept for the thought that Noah may or may not be verbal. To not know is what kills me. I wept for the gut wrenching pain that I sometimes feel when thinking of what other "typical" 3 year old's are doing. I'm sorry but sometimes it still hurts. I know I am strong. I know I can handle my life but it's not easy. Nothing comes easy anymore. That is the reality. I get tired of pretending that I am always strong. I'm not. Sometimes there are still tears.


marilynd65 said...

You never have to pretend with me, Kristi. I know it still hurts. Please know that I understand what you are going through. I am sure that Mr. Noah will work through his challenges on "Noah's Time".

I love you and will be there for you, Mom

Our Journey said...

you are not alone!!

Kerri H said...

Its okay to feel that way...I had one of those days just recently..felt so emotional and overwhelmed! I suppose its just because they're getting ready to test Logan again at school..lots of forms to fill out..ugh..showing everything he can't yet do...here's to hoping those days become less and less painful..we're there with you! Call me if you need just need to talk...take care and hugs!

Jessica mommy to Alex/ RTS said...

I am guessing we will always have tears at times.
Its ok.

Jacqui said...

A friend of a friend wrote me a letter when our Matt was born. Her son is blind. She was sharing how most of the time she is fine but every now and then something will happen and the pain will rise up and hit her in the face like a runaway train. And she is left reeling. She says that as her son has gotten older the "train wreck" incidents become less frequent, and she seems to recover quicker - but they do still happen.

So you are not in any way weird or reacting inappropriately. I am the same.


Kelly said...

Your feelings are shared. I think I will always cry. You are doing great with Noah! Noah is doing great! Kelly F

Mary said...


You are doing such a fantastic job with all you do. It is okay to cry...we all do it from time to time. It helps make us stronger. Hang in there my dear. We love you very much and God loves y'all very much too.

We are always here for you also.

Mucho love,

Mary and Pat (aka Mom and Dad, aka Grandma and Grandpa)